Lack of Experience of Death in the Family

Most adults today have not witnessed the death of a family member in the home at a time when they themselves were young and still forming their overall view of life. Although the number varies with regional demographics, for the last few decades more than 65% of deaths have occurred in hospitals or institutions. By contrast, a century ago approximately 90% of deaths occurred in the home. This shift is associated with a change in family structure as the norm evolved from that of the extended family to that of the nuclear family. Thus, elderly people are less likely to be living with their grandchildren and usually do not have young, fit relatives available to support them at the time of their last illness. By the same token, in contemporary society, a normal childhood and adolescence do not include the personal experience of a family death that occurs in the home.

Other factors that determine the place of most deaths are the growth and range of modern health services and the increased facilities and treatments they offer. Although these services undoubtedly offer medical and nursing care advantages for the person who is dying in an institution, family support for the patient is disrupted, and surviving relatives are deprived of the experience and understanding of the dying process.

This is not to imply that witnessing a death at home in the past was always a serene or tranquil experience. Although a death at home may not have been a pleasant event, a child who grew up in such a home would be imprinted with a sense of the continuity of life, the process of aging, and the natural inevitability of death (“when you are older you look like dad, when you are much older you look like granddad, when you are very, very old you die”). As the extended family has disappeared, dying has become the province of the health care professional or institution; most people have lost that sense of continuity and now regard the process of dying as intrinsically alien and divorced from the business of living.

High Expectations of Health and Life

Advances in medical sciences are often overreported in the media and hailed as major breakthroughs. The constant bombardment of the public with news of apparently miraculous advances in the fight against disease not only subconsciously raises expectations of health, it also appears to offer tantalizing hopes of immortality. Thus, it becomes even harder for an individual to face the fact that he or she will not be cured despite the many miracles seen on television or in the newspapers.

Materialism

It is beyond the scope of a textbook to assess the materialist values of the modern world, except to point out that our society routinely evaluates a person’s worth in terms of material and tangible values. This is our current social system of values, and it is neither good nor bad. However, it is universally accepted in our society that dying means being parted from material possessions. Hence a society that places a high and almost exclusive value on the material possessions of its members implicitly increases the penalty of dying.

The Changing Role of Religion

The role of religion changed in the twentieth century. In North America and in much of Europe the previously near-universal view of a single, exterior God became fragmented and individualized. More individual philosophical stances became possible than in earlier centuries, and it is no longer possible to assume that everyone shares the same idea of a God or of an afterlife. Whereas a Victorian physician in England could have said to a patient, “Your soul will be with its Maker by the ebb-tide” and may have genuinely meant it as a statement of fact and consolation, nowadays we cannot assume that such a statement will bring relief to all, or even most, patients.

For all these reasons, then, our society is passing through a phase of development in which the process of dying is often perceived as alien and fearsome and the dying person is separated and divided from the living. This situation increases the uncertainty that surrounds any conversation about dying.

Sympathetic Pain

We are likely to experience considerable discomfort simply by being in the same room as a person who is going through the distress of facing death. This sympathetic pain may seem so patently obvious that it does not need to be stated, but it is often the case that professionals feel distressed by a painful interview and markedly underestimate the intensity of feeling that has originated from the patient. Particularly with trainees and junior staff, the degree of stress experienced by a health care professional is proportional to the intensity of the patient’s distress. Until this is openly acknowledged, the professional may not seek the support that he or she needs and may continue to experience feelings of personal inadequacy and guilt, thus creating another set of factors that block good communication.

Fear of Being Blamed

As professionals, our fear of being blamed is partly justified. This fear has two main components. First, as the bearer of bad news, we are likely to be blamed for that news (blaming the messenger for the message). This is probably a basic human reaction to bad news and one with which we are all familiar in daily life (e.g., blaming a traffic warden for writing out a parking ticket), so we are somewhat justified in expecting it when it is our role to bring bad news. Furthermore, many of the trappings of our profession (e.g., uniforms, jargon, ward rounds) help to support the concept that we are in control of the situation. This concept may be valuable when the patient’s condition is improving, but the same trappings increase the likelihood that we will become targets of blame when the patient’s clinical condition begins to deteriorate.

Second, the notion that someone must be at fault when a patient deteriorates or dies is a concept imbued in us during our training. This attitude is strongly reinforced by medicolegal practice in which monetary sums are attached to a deterioration in health. Medical school training inadvertently reinforces this feeling in physicians. Medical school education prepares doctors (appropriately) to deal with the myriad reversible or treatable conditions, whether common or rare. Until recently, however, there has been little or no teaching on the subject of what to do when the disease cannot be reversed (hence the need for this textbook). Palliative medicine has not previously been included in the undergraduate curriculum of medical school, and, as a result, most medical students evolve into physicians who are keen to treat the curable conditions but who have little training in how to deal with chronic, irreversible diseases. This omission makes it even more difficult for the physician to deal with his or her own sense of therapeutic failure when communicating with a dying patient.

Fear of the Untaught

We also fear talking to a dying patient if we do not know how to do it properly. In all professional training, trainees are rewarded for doing a particular task “properly.” In essence, this means following conventional procedures and avoiding deviations from standard practice. Although this is the accepted and justifiable norm for any procedure for which guidelines have been established, if no guidelines exist (as is the case in communicating with the dying), the professional will naturally feel ill at ease and will tend to avoid the area entirely.

Fear of Eliciting a Reaction

In the same way that professionals dislike doing tasks for which they have not been trained, they also avoid the side effects or reactions caused by any intervention unless they have been taught how to cope with them. It is an axiom of medical practice that you “don’t do anything unless you know what to do if it goes wrong.” If there has been no effective training in talking to patients about dying and death, there will also have been no training in how to deal with complications or side effects of such conversations (e.g., the patient’s becoming angry or bursting into tears). Not knowing how to cope with these reactions further increases the aversion an untrained person feels when communicating with a dying patient.

Furthermore, interviews in which patients show emotional reactions may earn discouraging responses from other professionals. Although it is now less common than a few years ago, some senior physicians and senior nurses still think that it is a bad thing to “get the patient all upset.” It should be obvious (but it is often ignored) that if a patient bursts into tears during a discussion about the gravity of his or her illness, it is the medical situation, not the discussion, that has caused the tears.

Fear of Saying “I Don’t Know”

No matter the training or discipline, health care professionals are never rewarded for saying “I don’t know.” In all training, and particularly when being tested, we expect that our standing will be diminished if we confess that we do not know all the answers. In everyday clinical practice, by contrast, honesty shown by the professional strengthens the relationship, increases trust, and, in return, encourages honesty from the patient. Conversely, attempts to “flannel” or “snow” the patient, to disguise ignorance, or to pretend greater knowledge or experience weaken the bond between the patient and the doctor or nurse and discourage honest dialogue. Thus, our fears of displaying our ignorance—normal in tests but not appropriate in clinical practice—make communication increasingly difficult when the answers are unknown and, often, unknowable.

Fear of Expressing Emotions

We are also encouraged and trained to hide and suppress our own emotions (this may be truer of medical students than of nursing students or trainees in other disciplines). It is, of course, essential for truly professional behavior that we modulate emotions such as irritation or panic. However, this training inadvertently encourages us to envisage the ideal doctor as one who never shows any emotions and is consistently calm and brave. Although that is not necessarily a bad paradigm for a doctor who is dealing with emergencies or reversible crises, it is unhelpful in the palliative care setting. When a patient is facing death, a professional who expresses no emotions is likely to be perceived as cold or insensitive.

Ambiguity of the Phrase “I’m Sorry”

Even when we want to show human sympathy, the moment we begin do to so, linguistic problems threaten to create further difficulties. Most of us do not realize that the word sorry has two quite distinct meanings. It can be a form of sympathy (“I am sorry for you”), and it can also be a form of apology when accepting responsibility for an action (“I am sorry that I did this”). Unfortunately, both meanings are customarily abbreviated to “I am sorry.” This reflex abbreviation can commonly lead to misunderstanding. For example:

• A
  

  “… and then my mother was brought into hospital as an emergency.”

  
  
• B
  

  “Oh, I am sorry.”

  
  
• A
  

  “You’ve got nothing to be sorry for.”

The first speaker is so used to hearing the word sorry as an apology that she or he responds with a reflex reply to an apology before realizing that it was not an apology that was offered but an expression of sympathy. This has relevance to all of us as professionals. Not only is it difficult for us to overcome some of our trained responses to express our own emotions of sympathy and empathy, the moment we try to do so we fall into a linguistic slip and appear to be accepting responsibility (with the associated medicolegal implications) instead of offering support. The solution to this ambiguity lies in paying careful attention to your own speech patterns: Rather than saying “I am sorry,” you can use the specific words “I am sorry that happened to you.”

Our Own Fears of Illness and Death

As professionals, most of us have some degree of fear about our own deaths, perhaps even more so than the general population. In fact, some psychologists would suggest that the desire to deny one’s own mortality and vulnerability to illness is a component of the desire to be a doctor, nurse, or other health care professional. This is sometimes called counterphobic behavior and, in real terms, means that each time we have an encounter with a sick person and emerge from the encounter unharmed, we are reinforcing our own illusions of immortality and invulnerability. If this is indeed a major constituent of the desire to be a health care professional, then it may lead to avoidance of those situations in which these illusions are challenged. Hence the professional’s own fear of dying can lead to avoidance or blocking of any communication with the dying patient.

Fear of the Medical Hierarchy

Finally, there is the discomforting fact that not all professionals think of these issues as important, perhaps because of their own fears of illness and death, fears of the untaught, and so on. Thus, when trying to have a conversation with a patient about dying, a junior member of a medical team may be under pressure from a senior staff member. In more old-fashioned hierarchical systems (e.g., in the United Kingdom in the 1960s), it was quite possible for a senior physician to state: “No patient of mine is ever to be told that he or she has cancer.” Nowadays, for ethical and legal reasons, that stance is less tenable, but occasional instances of this attitude can still make it difficult to respond to the patient’s desire for information and support. This problem sometimes has a solution when a hierarchy of care exists in which the patient’s questions, reactions, knowledge, or suspicions can be transmitted upward to the senior person concerned.

Spatial Arrangements

Try to ensure privacy. In a hospital setting, draw the curtains around the bed if a side room is not available. In an office setting, shut the door. Next, move any physical objects out of the way. Move any bedside tables, trays, or other impediments out of the line between you and the patient. Ask that any televisions or radios to be turned off for a few minutes. If you are in an office or room, move your chair so you are next to the patient, not across the desk. Evidence indicates that conversations across a corner occur three times more frequently than conversations across the full width of a table. Clear any clutter and papers from the area of desk that is nearest to the patient. If you have the patient’s chart open, make sure you look up from it and do not talk to the patient while reading the chart. If you find any of these actions awkward, state what you are doing (“It may be easier for us to talk if I move the table/if you turn the television off for a moment”).

Then, arguably the most important component of organizing the physical context, sit down. This is an almost inviolable guideline. It is virtually impossible to assure a patient that she or he has your undivided attention and that you intend to listen seriously if you remain standing. Only if it is absolutely impossible to sit should you try to hold a medical interview while standing. Anecdotal impressions suggest that when the doctor sits down, the patient perceives the period of time spent at the bedside as longer than if the doctor remains standing. Thus, not only does the act of sitting down indicate to the patient that he or she has control and that you are there to listen, but it also saves time and increases efficiency. Before starting the interview, take care to get the patient organized if necessary. If you have just finished examining the patient, allow or help him or her to dress and to restore a sense of personal modesty.

It is also important to be seated at a comfortable distance from the patient. This distance (sometimes called the body buffer zone ) seems to vary from culture to culture, but a distance of 2 to 3 feet between you will usually serve for the purpose of intimate and personal conversation. This is another reason that the doctor who remains standing at the end of the bed seems remote and aloof.

The height at which you sit can also be important; normally, your eyes should be approximately level with the patient’s. If the patient is already upset or angry, a useful technique is to sit so you are below the patient, with your eyes at a lower level. This position often decreases the anger.

Whenever possible, make sure that you are seated closest to the patient and that any friends or relatives are on the other side of the patient. Sometimes relatives try to dominate the interview, and it may be important for you to send a clear signal that the patient has primacy.

In almost all oncology settings, it is important to have a box of tissues nearby. If the patient or a relative begins to cry, it is important to offer tissues. This act not only gives overt permission to cry but also allows the person to feel less vulnerable when crying.

Body Language

Body language makes a difference. Try to move and talk in an unhurried fashion to convey that the person to whom you are relating matters. To achieve an air of relaxation, sit down comfortably with both your feet flat on the floor. Let your shoulders relax and drop. Undo your coat or jacket if you are wearing one, and rest your hands on your knees (in psychotherapy this is often termed the neutral position ).

Eye Contact

Maintain eye contact for most of the time that the patient is talking. If the interview becomes intense or emotionally charged, particularly if the patient is crying or is very angry, it will be helpful to the patient for you to look away (to break eye contact) at that point.

Touching the Patient

Touch may also be helpful during the interview if (a) a nonthreatening area is touched such as a hand or forearm, (b) you are comfortable with touch, and (c) the patient appreciates touch and does not withdraw. Most of us have not been taught specific details of clinical touch at any time in our training. We are therefore likely to be ill at ease with touching as an interview technique until we have had some practice. Nevertheless, considerable evidence (although the data are somewhat “soft”) suggests that touching the patient (particularly above the patient’s waist, to avoid misinterpretation) is of benefit during a medical interview. It seems likely that touching is a significant action at times of distress and should be encouraged, with the proviso that the professional should be sensitive to the patient’s reaction. If the patient is comforted by the contact, continue; if the patient is uncomfortable, stop. Touch can mean different things and can be misinterpreted (e.g., as lasciviousness, aggression, or dominance), so be aware that touching is an interviewing skill that requires extra self-regulation.

Commencing the Interview

Ensure that the patient knows who you are and what you do. Many practitioners, including myself, make a point of shaking the patient’s hand at the outset, although this is a matter of personal preference. Often the handshake tells you something about the family dynamics as well as about the patient. The patient’s spouse will frequently also extend his or her hand. It is worthwhile to make sure that you shake the patient’s hand before that of the spouse (even if the spouse is nearer), to demonstrate that the patient comes first and the spouse (although an important member of the team) comes second.

Open Questions

Open questions are ones that can be answered in any way or manner. The question does not direct the respondent or require that he or she make a choice from a specific range of answers. In taking the medical history, of course, most of the questions are, appropriately, closed questions (e.g., “Do you have any difficulty with fine hand movements?” “Do you have any areas of numbness or tingling?”). In therapeutic dialogue, when the clinician is trying to be part of the patient’s support system, open questions are an essential way of finding out what the patient is experiencing, to tailor support to the patient. Hence open questions (“What did you think the diagnosis was?” “How did you feel when you were told that?” “What did that make you feel?”) are a mandatory part of the “nonhistory” therapeutic dialogue.

Silence

The first and most important technique in facilitating dialogue between patient and clinician is the use of silence. If the patient is speaking, do not overlap your speech by talking over her or him. Wait for the patient to stop speaking before you start your next sentence. This, the simplest rule of all, is the most often ignored and is most likely to give the patient the impression that the doctor is not listening.

Silences also have other significance: They can, and often do, reveal the patient’s state of mind. Patients often fall silent when they have feelings that are too intense to express in words. A silence therefore means that the patient is thinking or feeling something important, not that he or she has stopped thinking. If the clinician can tolerate a pause or silence, the patient may well express the thought in words a moment later. If you have to break the silence, a helpful way to do so may be to say “What were you thinking about just then?” or “What is it that’s making you pause?” or words to that effect.

Evident Hearing

Once you have encouraged the patient to speak, it is valuable to demonstrate that you are hearing what is being said. Hence, in addition to silence, dialogue may be facilitated by using any of these facilitation techniques: nodding, pausing, smiling, and using responses such as “Yes,” “Mmm hmm,” “Tell me more.” In addition, it is often valuable to use repetition as a conscious and deliberate facilitation technique. To demonstrate that you are really hearing what the patient is saying, employ one or two key words from the patient’s last sentence in your own first sentence. For instance, if the patient says “I just feel so lousy most of the time,” begin your response with “Tell me what you mean by feeling lousy.” Reiteration means repeating what the patient has told you, but in your words, not the patient’s: “Since I started those new tablets, I’ve been feeling sleepy” “So you’re getting some drowsiness from the new tablets?” Both repetition and reiteration confirm to the patient that you have heard what has been said.

Clarifying

As the patient talks, it is very tempting for the clinician to go along with what the patient is saying, even if the exact meaning or implication is unclear. This may quickly lead to serious obstacles in the dialogue. Hence it is important to be honest when you have not understood what the patient means. Several different phrases can be used (“I’m sorry—I’m not quite sure what you meant when you said… ” “When you say … do you mean that …?”). Clarification gives the patient an opportunity to expand on the previous statement and to amplify some aspect of the statement now that the clinician has shown interest in the topic.

Handling Time and Interruptions

Clinicians seem to have a poor reputation for handling interruptions, whether caused by phone, pager, or other people. We may often appear to abruptly ignore the patient we have been speaking with to respond immediately to a phone call, a page, or a colleague. Even though it may be inadvertent, the patient frequently interprets this as a snub or an insult. If it is not possible to hold all calls or to turn off the pager, then it is at least worthwhile to indicate to the patient that you are sorry about the interruption and will resume the interview shortly (“Sorry, this is another doctor I must speak to very briefly. I’ll be back in a moment” or “This is something quite urgent about another patient—I won’t be more than a few minutes.”). The same is true of time constraints (“I’m afraid I have to go to the ER now, but this is an important conversation. We need to continue this tomorrow morning on the ward round.”).

The Empathic Response

The empathic response is an extremely useful technique in an emotionally charged interview, yet it is frequently misunderstood by students and trainees. The empathic response need not relate to your own personal feelings: If the patient feels sad, you are not required to feel sad yourself. It can be a technique of acknowledgment, showing the patient that you have observed the emotion he or she is experiencing. Empathic response consists of three steps:

• 1
  

  Identifying the emotion that the patient is experiencing

  
  
• 2
  

  Identifying the origin and root cause of that emotion

  
  
• 3
  

  Responding in a way that tells the patient that you have made the connection between 1 and 2

Often the most effective empathic responses follow the format of “You seem to be …” or “It must be …”; for example, “It must be very distressing for you to know that all that therapy didn’t give you a long remission” or even “This must be awful for you.” The objective of the empathic response is to demonstrate that you have identified and acknowledged the emotion that the patient is experiencing and by doing so you are giving it legitimacy as an item on the patient’s agenda. In fact, if the patient is experiencing a strong emotion (e.g., rage or crying), you must acknowledge the existence of that emotion or all further attempts at communication will fail. If strong emotions are not acknowledged in some way, you will be perceived as insensitive, and this will render the rest of the interaction useless.

To stress it once more then, the empathic response is your acknowledgment of what the other person is experiencing. It need have nothing to do with your own personal view or judgment of the situation or how you yourself would react if you were facing these circumstances. You do not have to feel the same emotion that the patient is experiencing, nor do you even have to agree with the patient’s viewpoint. You are simply observing what the other person is feeling and bringing that emotion into the dialogue between the two of you.